March 15, 2023

Statement on PIDs and their recognition as a disability for disability support

Globally there are large differences in recognition and support towards patients with primary immunodeficiency (PID). It has recently been brought to IPOPI’s attention that many adults living with PID worldwide are not eligible for disability support, even when experiencing serious (at times non-visible) impairment.

This is in violation of the international human rights treaty outlined in ‘The Convention on the Rights of Persons with Disabilities’ as adopted by the UN Nations General Assembly.

Therefore, we have recently issued a position statement arguing that PIDs causing a heavy burden of disease must always be recognised as disability and that such patients should receive the necessary long-term financial and practical assistance. We believe that the rarity of PIDs should never be used as an excuse to deny patients their right to disability support.

This statement is endorsed by our colleagues from APSID, ARAPID, ASID, CIS, ESID, INGID, LASID and SEAPID.

Read the full statement here.